Appreciating My Abilities When Coping With Disabilities

Hi lovely people! 💙

This post is basically a little pat on the back to myself and a lesson in believing in my ABILITIES, rather than focusing on my disabilities.

1) I always wanted a laptop with skateboard/band/creepy cute stickers on.

Being Dyspraxic (so having little spacial-awareness and very sporadic coordination) I always assumed I’d arse it up. That really wasn’t an option as my MacBook was a very generous present from the person I loved so I didn’t want it to look shite.

Considering this project has evolved over eight years, I think I’ve done an amazing job and it looks cool, rather crowded or having random gaps etc.

2) I’ve also created and managed a successful green/alternative lifestyle blog for this amount of time too. I’ve stopped doing reviews of gifted items and attending press events due to my health probs BUT it still gets a lot of views, likes and some comments, meaning I’m still coming up with engaging content. I’m also writing in my own unique (slightly bonkers) voice, which I think has helped the longevity of this blog too.

I never would I have thought that I’d be able to keep ANYTHINg going for that long, and of any consistent quality, because of ADHD and Dyspraxia (not even counting the chronic fatigue from having Dyspraxia and Hypermobilty Syndrome) and yet, I have.

Yay me! 💃🏽

Just shows you that giving things a go might actually work out, and if not, well at least you know now, rather than always wondering.

✨💙✨Chrissie✨💙✨

How Depression Crept Up on Me and Advice

This time two years ago I posted the photo below to Instagram and said I was having a girly-night to myself and made it sound so positive.

What I didn’t say was that I’d had to go on Just Eat to find somewhere local which sold food and beer/wine because it felt like an overwhelming physical AND mental impossibility to go to the local shops. I was so hungry and really needed something to cheer myself up too.

I’d gotten into the habit of not getting (dragging myself) out of bed until 4.00pm (sadly after it had gone dark) so I hadn’t seen daylight for five days. I’d stopped being bothered to get dressed or comb my wildly frizzy hair or to tidy up.

The bloke had to be elsewhere and he was so stressed and busy he really needed to get on with it and I was trying to be as supportive as poss. But I was on my own all week, until weekend and felt really lonely. But I also felt guilty and silly bothering him.

I realise looking back that the Depression had crept back but at the time I was kidding myself that I was having fun enjoying not having any responsibilities or structure.

Ironically that is exactly what helps me, as it stops the endless days and nights all blending together. Plus someone to bounce my thoughts off so they aren’t swimming around in my head and growing more negative and repetitive is vital for me.

I wish I’d put an honest caption on Insta about how I was feeling at the time or told my Dad or my bloke how I felt. BUT I’d been fighting for decades to have my disabilities and chronic illness recognised and to get on ESA benefit so I could rest at home all day. I felt guilty that I wasn’t now happy and thought I must be being ungrateful or overly-dramatic. But actually, when you can’t or aren’t doing much, whole days and nights alone can seem like an eternity.

After doing this on repeat for about a month (literally just living for the weekend when my bloke would be able to come back basically) I phoned him in floods of tears.

We talked for an hour and worked out a better way of doing things and it made a vast amount of difference to my mental health.

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There isn’t always a reason though. Sometimes clinical depression can hit you for no reason at all and that’s perfectly normal, not your fault and just as valid.

If you are feeling crappy or apathetic to stuff you normally love doing or are struggling to keep your head above water, please don’t fool yourself you are ‘fine’. Admit to yourself that you aren’t feeling okay and then tell someone else, even if it’s just one other person (i.e. a considerate family member, a friend, an empathetic friend of a friend or your GP for instance) IRL or online.

You don’t have to be fine all of the time and forcing yourself to try can do more damage than good. Being open and honest about your feelings can lift a huge weight.

It’s ok not to be ok 🙃

✨✨🖤Chrissie🖤✨✨

Successful War with the Department for Work and Pensions and Illness Update

I’ll start with some good news first. I won my appeal against the Department for Work and Pensions – yay! I am so utterly relieved!

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DWP Assessment

Previously the DWP had ‘assessed’ me in the most pointless way – it was pointless because they literally awarded me no points, meaning that I was supposedly fit for work. I appealed with endless evidence from my GP and Neurologist who wrote me a letter especially for that purpose. I wrote a thorough list of notes on a copy of their report (which I had to request myself) addressing where they had taken things out of context and at one point completely omitted that I’d failed their memory test! Again the DWP utterly ignored all of this saying their original decision was correct and that I was fit for work.

Tribunal Appeal

I took them to tribunal where I faced two lovely and very understanding people with no government agenda who actually wanted to listen and understand me before judging my abilities. So with the evidence from my GP and Neurologist and the DWP report that I’d enthusiastically corrected in my best angry scrawl (blush) and my verbal testament and  written testament and my answers to their gentle and relevant questions, they concluded that my Neurology didn’t exactly fit in with the DWP’s points system but regardless of that fact, my fatigue, memory and spacial awareness problems rendered it too stressful for me to struggle with holding down a job and it would be at a detriment to my mental health – having previously suffered from severe depression after a never ending cycle of starting jobs, doing my absolute best, failing to cope and then being ‘let go’ from the companies.

Phew and Thank You!

There is absolutely no way I could have done this without the help of my family and friends and there support, advice and constant reminders to follow things up! Anyone who has managed to do this on their own is an absolute hero in my opinion. Online communities like Twitter and the Dyspraxia, MS and Sensory Processing Disorder Facebook pages and their members have been a massive source of empathy and knowledge also.

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So what the hell is up with me exactly?

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I have an autoimmune disease which means my body’s immune system is attacking healthy cells thinking they are invading and so destroying them. Unfortunately my immune system is actually attacking my brain and the myelin sheath that protects my nerves in my spine which is called demyelination. Unfortunately this is a  degenerative condition of which there is no cure for – some heavy shit I know! Fortunately there are drugs and exercises (mental and physical) to manage the symptoms (with varying degrees of success). My symptoms are so similar to MS my Neurologist has not yet ruled it out.

So Practically Speaking….

Basically the signals from my nerves are either very weak, don’t get sent or are slow to be understood by my brain and/or body. For instance my brain could ask my body to lift my foot up when going upstairs and my body’s response is either slightly late or my foot doesn’t lift up quite enough – oops! On the reverse side of that, I could have put a little bit of food in my mouth that is far too hot but because this signal from my body has taken a while to reach my brain I’ve already shovelled another spoonful in my mouth – ouch! I can see how dodgy nerve/brain signals can also effect memory and attention but why I get fatigue though I still don’t understand. I’ve been told ‘It’s just part of it.” It does take me a lot more energy to do things properly and to keep my thoughts straight than the average person but fatigue is a lot different than just feeling tired. It’s like the debilitating exhaustion of being really really hungover.

And The Other Conditions…

Along with that it’s clear I’ve had Dypraxia all of my life and to me personally I find that 80% of the demyelination symptoms are very similar but to a higher, even more unpredictable degree. Both the demyelination and Dyspraxia cause major sensory issues so I can also empathise with people who  have Sensory Processing Disorder. Because all of my different symptoms overlap so much I tend not to bother explaining that I have SPD because that is just a range of symptoms from the other two conditions I assume and not something that is separate (like it is for a lot of people).

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I have no clue if anyone is a) reading this b) remotely interested. It’s here if anyone wants to use it as a resource for future reference or wants to understand the things I’ve mentioned a little better. If you have any questions just ask and I’ll do my best to answer them.

Chrissie xx